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Severe stomach symptoms!


jess88

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jess88 Newbie

Hi new to the forum.. Have been diagnosed with the hq8 gene, and have not had a biopsy yet..still waiting. I do have severe stomach bloating and pain at night which lasts for around 5 hours... where I am in absolute agony, this pain is centre of my stomach, with stabbing sensations in my right side as well as radiating to my back. I  also suffer from constipation, sometime diahrea, and vomiting, low vitamin D and b12 , mouth ulcers and have Underactive thyroid... My question to anyone is although consuming more gluten, some nights my pain is alot worse then other nights, lasting hours...and other days i might just have a headache Is this typical of Celiacs disease? I know people have different symptoms, but i am still not sure if this could be it.. Waiting is painfull when you don't know whats wrong.


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Ennis-TX Grand Master
6 hours ago, jess88 said:

Hi new to the forum.. Have been diagnosed with the hq8 gene, and have not had a biopsy yet..still waiting. I do have severe stomach bloating and pain at night which lasts for around 5 hours... where I am in absolute agony, this pain is centre of my stomach, with stabbing sensations in my right side as well as radiating to my back. I  also suffer from constipation, sometime diahrea, and vomiting, low vitamin D and b12 , mouth ulcers and have Underactive thyroid... My question to anyone is although consuming more gluten, some nights my pain is alot worse then other nights, lasting hours...and other days i might just have a headache Is this typical of Celiacs disease? I know people have different symptoms, but i am still not sure if this could be it.. Waiting is painfull when you don't know whats wrong.

Yeah sounds about normal for a line up of symptoms, You have to keep eating the gluten for the blood testing for 12 weeks prior and 2 weeks for hte following endoscope and biopsy. You can cut down to only eating 1/2 slice of bread a day or a few handfuls of wheat thins.

Many of us have issues with nutrient absorption and common problem foods due to damaged intestines. Magnesium it is different from person to person what form works best but either Natural Vitality Calm (can irritate the gut, it needs to be started at 1/4 tsp 2x daily and slowly raised to the full dose over week or 2) if this is too irritable I suggest Doctors Best Magnesium both are powdered and can be blended with a drink.

B-vitamins I suggest a blend like Liquid Health Stress & Energy in combination with Liquid Health Nurolgoical Support 1tbsp each 3 times a day, again this is blended with a drink, is liquid form making it easy for your body to absorb.

Vitamin D is also available from Liquid Health be careful with dosing on this as too much can trigger vomiting and it stays in your body so not everyone needs it daily.

Painful hours with more gluten yeah. slight residue make me sick, numbness in my extremity, brain fog, bit of Mr Hyde mood swings and alternating D and C. Full on gluten....happened in June of 2016 when I last ate out.....I lost motor control (I have gluten ataxia in addition), and was on the floor in extreme pain vomiting violently for hours so hard I was puking blood. I had a friend who thought I had died kept checking my pulse my heart rate monitor averaged my BPM in the 30s for this, and I turned completely white. Later that night I was able to make it the toilet for the back half of the purge and the rest of the week was fogged blur......

Other foods to avoid, dairy as the enzymes to break it down are produced by the tips of the villi which are damaged first by this disease. Oats are a common cross contaminated foods and some celiacs react to them regardless of gluten in them the same way so we suggest removing these foods from your diet for a while til you heal a bit then trying them again if you wish.

Please look at the following information links as your new to this BUT STAY ON gluten til your testing is done, if you test negative then you might still have NCGI and might want to try gluten free anyway. SO you can start cleaning out and getting ready if you wish for the change over.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

cyclinglady Grand Master
7 hours ago, jess88 said:

Hi new to the forum.. Have been diagnosed with the hq8 gene, and have not had a biopsy yet..still waiting. I do have severe stomach bloating and pain at night which lasts for around 5 hours... where I am in absolute agony, this pain is centre of my stomach, with stabbing sensations in my right side as well as radiating to my back. I  also suffer from constipation, sometime diahrea, and vomiting, low vitamin D and b12 , mouth ulcers and have Underactive thyroid... My question to anyone is although consuming more gluten, some nights my pain is alot worse then other nights, lasting hours...and other days i might just have a headache Is this typical of Celiacs disease? I know people have different symptoms, but i am still not sure if this could be it.. Waiting is painfull when you don't know whats wrong.

Welcome!  

Consider asking your doctor for a celiac blood test panel.  It measures antibodies.  The gene test is not effective for a diagnosis because some 30% of the population carries the genes that can develop into celiac disease and only a very few actually go on to develop it.  It is used more commonly to help rule out celiac disease.  

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i hope you feel better soon!  

 

TexasJen Collaborator

I'm sorry you are feeling so poorly. Yes, people have a lot of the symptoms that you have, but sometimes not all of the symptoms can be attributed to celiac.

Here are some thoughts....

1. Keep eating gluten but don't overdo it - the equivalent of 1-2 pieces of bread should be enough. Maybe if you limit your gluten a little (and it really is celiac) you will feel a little bit better.

2. Cut out dairy now. A lot of people with celiac can't digest lactose. The symptoms are abdominal cramping, gas, bloating and diarrhea.  That includes yogurt, ice cream, milk, cottage cheese, and other cheeses.

3. You mentioned focused pain - Right pain that radiates to your back - that can be associated with gallbladder problems - ask your doctor about it. Maybe an exam and an ultrasound?

4. Keep a food diary. Maybe try some gluten free meals. If the pain only happens after gluten versus high fat vs dairy etc - it could lead to help you diagnose yourself.

5. Migraines are associated with celiac. Sometimes they go away completely on a gluten free diet, sometimes they are better, and sometimes they are not related. Ask your doctor.

Good luck!

 

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    • trents
      I would ask for a total IGA test (aka, Immunoglobulin A (IgA) and other names as well) to check for IGA deficiency. That test should always be ordered along with the TTG IGA. If someone is IGA deficient, their individual celiac IGA test scores will be artificially low which can result in false negatives. Make sure you are eating generous amounts of gluten leading up to any testing or diagnostic procedure for celiac disease to ensure validity of the results. 10g of gluten daily for a period of at least 2 weeks is what current guidelines are recommending. That's the amount of gluten found in about 4-6 slices of wheat bread.
    • jlp1999
      There was not a total IGA test done, those were the only two ordered. I would say I was consuming a normal amount of gluten, I am not a huge bread or baked goods eater
    • trents
      Were you consuming generous amounts of gluten in the weeks leading up to the blood draw for the antibody testing? And was there a Total IGA test done to test for IGA deficiency?
    • jlp1999
      Thank you for the reply. It was the TTG IGA that was within normal limits
    • trents
      Welcome to the forum, @jlp1999! Which IGA test do you refer to as being normal? TTG-IGA? Total IGA? DGP-IGA? Yes, any positive on an IGA or an IGG test can be due to something other than celiac disease and this is especially true of weak positives. Villous atrophy can also be cause by other things besides celiac disease such as some medications, parasitic infections and even some foods (especially dairy from an intolerance to the dairy protein casein). But the likelihood of that being the case is much less than it being caused by celiac disease.
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